A very warm welcome to all our friends and members to our 50th annual General Meeting which will take place at the Riverside Centre in Newport at 1.30pm on Friday 1st March. We will have a presentation from Nicola Murgatroyd from MyLiferaft - an online tool that helps keep all your medical and other information in one place, so that you don't have to keep telling people the same things. Here is a link to their website: http://www.myliferaft.com/
We will also be sharing information about our 50th anniversary events, so please do come along and find out about what this year is about. If you can't come, but would like information about the events, please contact us.
This link takes you to the debate that took place in Parliament on 25 October 2018 about fortification of flour with folic acid. A consultation will take place early this year and you are encouraged to participate and share your views on this important subject. Please write to your MP, Bob Seely (email@example.com ) to share your views.
Our new 50th anniversary leaflet is here! Fresh from the printers and ready for our year of events to mark our 50th anniversary, the leaflet features three of our young members, Joey (on the front cover below) and inside, Miah and Oliver. We will be distributing leaflets in coming weeks. It explains what Spina Bifida and Hydrocephalus are, and how to make contact with us. Our regular monthly advert in the County Press also gives contact details. If you know of someone who would benefit from our help, please get in touch.
We are pleased to share that both the Guardian and the Daily Telegraph are carrying stories indicating that the Government are going to approve the addition of folic acid to flour. The fortification campaign led by SHINE has been effective in showing the benefits of this and we await the final decision being announced. But it is looking good! Well done to all those who have supported this campaign, and we on the Isle of Wight are proud that we have been active in supporting it.
Our conference next year at Cowes Yacht haven needs sponsors! Do you know of any local businesses that would be interested in taking a stand on Tuesday 25th June? An opportunity to reach medical professionals! Contact Anne Axford on firstname.lastname@example.org
Another summer comes to an end - and what a summer it has been! Wonderful weather and some very successful events around the island, where we have been pleased to meet old friends and new.
We were at Wolverton Manor at the beginning of September with a tombola and we thank Sandra Revert and Donna Woodcock and their teams for being out and about across the island spreading the word about IW ASBAH.
Our committee meeting on September 21st talked about our plans for 2019 and our 50th anniversary. We are pleased to announce that there will be a family day at Tapnell Farm in May, a conference at Cowes Yacht Haven in June, and a dinner at the Lakeside Hotel in Wootton in September. More information will follow about all of these events.
Look out for our little green advert in the County Press on the first Friday of each month. This has brought new members who didn't know we existed and we are pleased to be offering support to them. Do spread the word that we are here to help.
If you know of an event where we could be represented, let us know.
And finally - a Christmas Party with Santa will be announced soon!
Vanessa Burden, Anne Axford and Gill Yaz at the Riverside Centre. Thanks to Vanessa for being our hostess for the day, and to Gill for coming down to the Island from SHINE'S HQ to spend time at Haylands Primary helping staff understand and manage a pupil with Hydrocephalus, and at the Riverside Centre to meet with individual members. If you didn't manage to meet with Gill and would like her contact details, let us know. She is always helpful and can make contact with GPs and other health professionals to mediate if need be.
This link takes you to an important report from the House of Lords "Stronger Charities for a Stronger Society" - it's worth a read. It pays particular attention to small charities and the important role they play in our society. This is us!
Gill Yaz, Health Development Manager at SHINE, the national charity for Spina Bifida and Hydrocephalus,visited the Island in March and talked to members about a range of issues, including continence. Individual members had time with Gill and found her knowledge and advice very helpful. She will be back again, so get in touch if you have something you would like to talk to her about.
We are here to support families and individuals on the Isle of Wight who have Spina Bifida and/or Hydrocephalus. If you know of someone who has these conditions, please do put them in touch with us. We are here to help in practical ways and can offer advice and support.
A link to the neurology department at St Mary's hospital which may be useful for our members.
Hydrocephalus talk 2.pptx
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Presentation-isle of wight 3 nov.pptx
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"As a child I was encouraged by my parents to believe I could achieve anything, and that attitude has never left me. I find it hard at times to think of myself as disabled, I just do things differently. Spina bifida need not limit a child's opportunities to progress and excel in life."
Baroness Grey-Thompson DBE
Download our leaflet for more information about us!
CS37292 Spina Bifida and Hydrocephalus leaflet (1) (1).pdf
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Youtube video about Hydrocephalus produced by national charity SHINE: link:
Isle of Wight Association for Spina Bifida and Hydrocephalus promotes a better life for people with disabilities!
We have been granted funding for a project to raise awareness on the Isle of Wight. This project is funded through the My Life a Full Life programme supported by the Isle of Wight Clinical Commissioning Group (CCG).
Here are ten volunteers who completed their training on last year and now support new families.
We are an independent charity which provides help and support for those with Spina Bifida and/or Hydrocephalus who live on the Isle of Wight and their families. We aim to provide independence and integration in the community.
Contact us through the website or by emailing or phoning us.
Secretary: Freya Conway - email@example.com
Chairman: Anne Axford email: firstname.lastname@example.org
Members enjoying an evening's bowling at Ryde in November 2013
Whether you are someone with Spina Bifida and/or Hydrocephalus, or a relative, we welcome you to our association. For advice, support or socialising, new members are always welcome. Get in touch!
Here is our Facebook page: https://www.facebook.com/